Hi I'm new here and its my daughter that has ocular melanoma she's only 27 years old. She was diagnosed in Feb and since then had PDT which started off working but then stopped and the tumor grew. She's just had radiation therapy 2 weeks ago and is doing really well so far. How do I cope with the bigger picture? The 6 monthly scans to check if its spread and the terrifying statistics that 50% of OM patients it does spread ? We are a family of2 just me and her she has a partner who has been a good support for her I have only just been able to face up to this is the future for 10 -15years How as a mum do I accept this?
Hi Delidi and welcome to the online community
I'm very sorry to read that your daughter was recently diagnosed with ocular melanoma. I do understand what a difficult time this is for both of you having been diagnosed with malignant melanoma (skin) myself nearly 4 years ago.
It's natural to worry that the cancer might spread, we all do, but you should try and take it one step at a time. Assuming that there's no reason to think that it's currently spread then try not to think further than that she's having treatment and is "doing really well". I can understand why you find the risk of spread statistics terrifying but try to concentrate on the fact that for 50% of people the cancer doesn't spread.
Probably my biggest piece of advice would be to stay off google! Google is not your friend where medical information is concerned. We've all done it - gone on to find something positive about our situation but come off feeling worse. Treatment for cancer has come on so much over the last few years that you might be reading information that is way out of date, or simply not true. If you want to learn more about ocular melanoma then stick to reputable sites like this one, Cancer Research UK or OcuMelUK where the information will be up to date. Of course, my apologies if this is already what you're doing.
You might like to join the family and friends group here which is a safe and supportive place to share your feelings and get support from others who have a family member living with cancer. If you'd like to do this just click on the link I've created and then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens. You can then introduce yourself and post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
When you have a minute, it would be really useful if you could pop something about your daughter's journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
What is a Community Champion?
I was wondering how you were a week on from your first post here?
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2020
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ. VAT no: 668265007